I'm the mother of Ralph, born April 29, 2007 with meconium aspriation syndrome and an atrial septal defect. He developed pulmonary hypertension as a result. He also has Down Syndrome. Ralph has 7 brothers and 2 sisters. These are our stories...

Friday, May 29, 2009

I love to come up with special projects to get accomplished over the summer. I have a few of them on the list that is floating around in my head. This was not one of them.

A dear son of mine took it upon himself to straighten up the mudroom/laundry room. In the process he ended up organizing all the shoes in the house. The little kids called it playing "shoe store!" How many pair of shoes does a family of 11 need?

Ralph decided to "help!" We ended up with 3 bags of shoes to donate. Thank you, dear son.

Monday, May 25, 2009

The whole family had a nice trip to the zoo today. Yep, everyone! The farm was not exactly a hit with Ralph. It was his first experience up close and personal with sheep and goats.

Daddy was helping him feed the sheep. I think Ralph was afraid they would eat his toes!

The penguins were really putting on a show today, racing and jumping and flying through the water. Here are some bananas we found in the jungle house.

We don't normally go into the jungle...the birds sort of freak me out. I was whacked in the shins by a bird in here one time. Richard was "dumped" on by a bird in the jungle house one time. And yet, we were good sports today.

Ruby rode in the sling and slept the whole time. After plenty of experimentation she has settled on those first two fingers.

Thursday, May 21, 2009

I set out awhile ago to get Ralph into some Sure Steps. I think it is odd that his doctors hadn't ordered an evaluation sooner. I also got busy with living life and dropped the ball. The therapist that we saw at the Children's Mercy Down Syndrome Clinic took one look at Ralph standing and said that we need to get him some orthotics!

Ralph had his evaluation yesterday and was measured for Sure Steps! They will be here in a week or so...I don't know. YAY!!

Of course I went by myself with Ralph and Ruby. It's always fun to watch people watch me carry Ralph, a purse, a diaper bag, and a baby in a carrier AND open doors. Ralph walked for the lady in his shoes, and then barefoot. And then he crawled around and played while we talked. The floor was dirty...eeeeewww. We had an appointment with his PT right after this so he got a baby wipe bath for his hands, knees and feet.

Our local EI providers have a therapy room at a childcare center near us. We set up an obstacle course for Ralph with a ramp to walk up , a tube to crawl through and a board to walk on. Richard was a dear and met me there to help Ralph get from one activity to the next. I wasn't sure how cooperative Ruby would be. It wouldn't have mattered though, because a friend of mine works there and she had time to hold Ruby and even walk around the facility showing her off!

A little girl with DS was there with her dad, too. She is just a few months younger than Ralph. The dad was curious...I guess because he noticed that I had a new baby. He asked me if I was afraid that I might have another child with DS, since my chances were much higher after having one. I thought that was an interesting question. I think I might have had some fears immediately after Ralph was born. But now, and while I was pregnant with Ruby, no fear about DS. Heart conditions, maybe. But DS? No.

Now I'd love to have another child with DS. I used this conversation to put in a plug for Reece's Rainbow. I shared with him about the kids with DS who need families. I shared what their fate is after they turn 4 years old. *Sigh*

Today Ralph had water therapy. I'm still not up to taking him into the pool so I enlisted Wesley's help. He stayed out pretty late last night, so I don't think he appreciated getting up to take Ralph to the YMCA at 9am. I know he didn't appreciate it. I bought him some dark chocolate M&M's, so I think he's OK now. Ralph is just SO close to walking! I want to really hit the PT hard right now while he is showing so much rapid improvement.

I can't wait to get those outrageous, pricey little plastic things on his feet!

Saturday, May 16, 2009

Sorry...still recovering from Wesley's graduation last week! I can't really party like I used to.

Daddy started to get emotional at the Teaching Parents Association Graduation rehearsal on Thursday night. He came in from the road just in time to attend. It was a long, confusing evening and our whole family was there. We didn't get in line fast enough for the ice cream social afterward. Ralph was crabby and Ruby was fussy so we left and went to the Dairy Queen for our own ice cream social. No waiting in line there!

Friday morning we had quite a frightening thunderstorm. The early morning storms scare me because we cannot hear the tornado sirens at our house. The wind was roaring and we thought we might lose some windows. We didn't. But, the cars were damaged a bit. So Friday was spent visiting the insurance office, finalizing the food we ordered for Sunday, getting kids' haircuts, finishing the cake, and...finding the perfect present for our graduate.

I don't know how my time got sucked up that day but I ended up hitting one store minutes before closing time and then wandering aimlessly through another one long after dark. I didn't find exactly what I was looking for, but close enough...a big old fashioned treasure chest. I wanted one that could be locked, but didn't find it. And (this was a tough decision) an LCD Hi-def TV! No, the cake didn't get finished.

Saturday morning flew by so fast as we tried to get everyone clean and presentable. We had to be at the church before noon. Somewhere along the way my mom arrived from Oklahoma. I had fun putting on pantyhose! I did my makeup in the car. Hectic!

At the ceremony the parents of the graduates lined up and filed in together. Then the graduates. It nearly killed me not to be in charge of the little kids! I was so worried that Ruby would start one of her crying fits and Ralph would yell. The big brothers and grandmas and auntie had everything under control, though.

We prayed and listened to a couple of fantastic instrumental and vocal performances. Then Senator Sam Brownback gave a commencement speech. He actually surprised us by shaking hands with all the parents as we were lining up beforehand. The speech was easy to listen to...full of nuggets of truth and good humor. I'll never forget what he said about running to someone in trouble instead of running away. It's not always the politically expedient thing to do.

In order to present the diplomas, the parents walked across the stage from one side and the students from the other to meet in the middle. As we walked, a short video interview of our child was shown on a big screen. It was a real blessing to learn a little bit about each one of the kids. As we met Wesley onstage, dad gave him his diploma and a great big manly bear hug. I hugged him and moved his tassel to the other side. We posed for pictures and walked back to our seats.

The kids all wore different colored caps and gowns. It was really very attractive and fun, especially when the class was presented and the kids all tossed their caps in the air!

It was 3 pm before we got out of there. I started making frosting when we got home. I really do my best work under intense pressure! Then we got the kids some pizza and left for the Senior Roast at our church. Chipper had the privilege of babysitting because Richard (a junior) was serving at the dinner and both grandmas and Aunt Linda came to the dinner along with us. Ruby came, too, and was a very good girl.

After the meal there were several cute and funny video presentations. Lots of people got up to speak at the open mike. The roasting was quite mild! I expected a little more heat.

I finally finished the cake after the dinner. Daddy wrapped up the TV and we made it to bed...I don't remember when, but it was late.

Sunday was Mother's Day! Of course daddy was scheduled to usher at church that morning. Grrr. At least he usually takes Ralph and Leroy with him when he goes early. Before he left he gave me a gift...a digital picture frame! What a surprise! I wanted to get one for the grandmas, but I never considered wanting one for myself.

Ralph had a Mother's Day open house in his Sunday School class. So, even though I was dead tired, I dragged myself out of bed and made it to church on time. The open house was just precious! Ralph headed to the story area and started passing out carpet squares when I arrived. He knew when to stand and when to sit and only needed a bit of help getting up and down. He knew all the action signs for the songs. I was so pleasantly surprised that it brought tears to my eyes.

A little later I was in tears for a different reason. The kids "hunted" for little felt flowers around the room and brought them up front to the teacher and the felt board. Ralph doesn't walk yet so I had to help him get around. The other kids hogged all the flowers before we could get to them. Grrr. Ralph doesn't care, yet. But I do.

I went home after Sunday School to tidy up the house for the party and fix a bit of lunch for the little kids. We all pulled together to finish getting the place picked up and the food set out. We had BBQ pork, coleslaw, chips, lemonade and tea. And cake! We had a great turnout. The house was packed for three hours with dear friends and family.

The treasure chest and TV were well received! Ralph got to help Wesley unwrap the TV. Wes has a real soft spot for Ralph. I just love that about him.

I was so relieved to have this fun weekend successfully completed. Monday morning I felt like a train hit me! Can't party like I used to...

Oh, and I got a nice little letter from the bio-services company that makes Synagis. It seems that they made a mistake back in 2007 and neglected to collect a $300 co-pay. Are you kidding me? I never would have agreed to the injection if they hadn't assured me that it would be covered 100%. Looks like I need to schedule another insurance/doctor office phone calling day.

Friday, May 8, 2009

Our trip last week went well! As we made our way to our little hotel in Westport I noticed that the bars were packed. On a Tuesday evening at 7pm? Then I drove past a big white party tent stuffed full of people and it hit me...Cincode Mayo! Of course!

The hotel was kind of dumpy in the common areas, but the room was nice and comfy. Ralph found a chair and ottoman to climb on...he had a blast! The TV kept turning itself off so the maintenance man came to swap it out for a new one. I ordered a pizza to be delivered, 'cause I wasn't taking these babies out to a restaurant after 3 hours in the car. The pizza man showed up with the wrong order, argh!

In the morning we scrambled to get over to the hospital by 8am. Traffic was light and the hotel was even closer than I thought. Driving past Ronald McDonald Longfellow House took me back in time. I used to walk from there to Children's Mercy every morning when Ralph was there in 2007. I always felt safe and walking in the fresh morning air would clear my head.

Surprisingly, I was able to navigate winding hallways and two sets of elevators and found the Down Syndrome clinic right away! We were shown to our room for the day after checking in. I gave up the idea of Ralph sitting on the exam table right away. He was going to have to play on the floor or risk a skull fracture!

The clinic coordinator asked me if it was OK for a medical student to sit in on our appointment today. I said it was fine. She was in year five of a six year combined undergrad/MD program at UMKC. Neat program, huh? Six years instead of eight! It was nice to have an extra set of grown up hands.

One by one we saw a nutritionist, audiologist, pediatrician, occupational therapist, psychologist. Ralph had his hearing tested in a sound booth and may have a hearing loss at a certain level. We have a sedated test scheduled in June to confirm this. The OT watched him attempt to walk and immediately got us a script for ankle foot orthotics. The psychologist had some good advice and strategies to help us deal with negative behaviors like throwing things and biting. We were done before noon, just in time for lunch. They will send me a report in a few weeks.

We dropped by the lab first to have blood drawn to check for Celiac and thyroid levels. Then to get into the hospital to get lunch in the cafeteria we had to go through security. They have cool new scanners which copy your ID photo onto a name tag. It's nice to know that they take security seriously. Thomas and Ralph enjoyed playing with the jukebox after we ate. What a great helper Thomas was!

We headed for home after lunch. Ruby and Ralph slept most of the way. Thomas even slept for about an hour! We got home just in time to get ready for Awana awards night. What a busy day!

Monday, May 4, 2009

I'm coming up on an incredible busy week. Tomorrow I head to Kansas City with Ralph and Ruby. Ralph has an appointment early Wednesday morning at the Children's Mercy Down Syndrome clinic. I BEGGED them for an early March appointment, because I knew. I knew what a tortuous day would be in store for me with a newborn and a two year old who doesn't walk yet.

So, I leave tomorrow and I'm still not sure how it's going to work. I've got major schedule conflicts to work out at home, too. I DO have a hotel room, though! I guess that is something!

If I live through that, Thursday is graduation rehearsal and ice cream social. Friday is decorate the graduation cake day and pick up the house day. My mom is staying here Saturday night. Saturday is graduation ceremony in the afternoon and the senior roast dinner at church in the evening.

Sunday is graduation party in the afternoon at our house. Consider yourself invited! Come and go from 3pm-6pm or so. A sweet neighbor lady has taken pity on me and is fixing the food! We'll have barbecue pork, coleslaw, baked beans, and cake. I still need to come up with the perfect graduation gift for my firstborn. (I'd better put that on the list for Friday)

I guess that would also be Mother's Day?! And Monday is daddy's birthday. There is something happening on Monday and Tuesday, but I can't quite remember...

Saturday, May 2, 2009

Ralph loves bunnies. He has several bunnies to choose from at bedtime each night. I lay him down on his pillow, hand him a bunny to hug (which he does, sooooo cute!), and cover them both up. That's it. He goes to bed very nicely.

Today he was pretending to be a bunny. Don't you just love the headband? I tried to get him to hop like a bunny. He doesn't really know how to jump...yet. His jumping involves mainly just bending at the waist and bobbing his head.

Ralph had started unzipping his pajamas lately. He zips them down halfway, at least. I guess he likes to show off his chest!